Dave R.

HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck

I wonder where you're reading this. On your tablet on your way to work? Sitting with a glass of wine in the warmth of your home? In a café on the corner? Wherever it is, I would imagine most of you will be glancing at it in a position of comfort, with all mod cons around you, warm and well-fed, just as I am while writing it.

Before you get the wrong idea, this is not a call for the abandonment of rubbers in favour of uninhibited sex. It's an attempt to place condoms in the context of a world where sexually transmitted infections (STIs) are out to get us at every turn.

It's no secret that I'm a supporter of better education regarding the safety of people with an undetectable viral load. I've had many reactions to that stance and almost all were supportive. I'm not alone in this; many serious voices have been lobbying for a better understanding of the word "undetectable." However, a significant minority both misunderstand and take offense at the message, claiming selfish motives to justify abandoning condoms for bareback sex. We're being accused of being in some HIV-positive clique, intent on converting others to our perversities.

Okay, look out folks, senior citizen out of control and about to rant!

To quote any queen on the Drag Race, I'm sick of being treated as a pariah (which the Oxford English Dictionary defines as: "a term of reproach or abuse: a worthless or contemptible person; a wretch, a cur."), officially!

It always seems pretty weak to begin an article with a disclaimer; as if you don't really believe in what you're writing. Well in this case, I genuinely don't know what to believe. My instinct says that governments who force people to do things are always a bad thing but I can't find a reasonable argument to defeat the premise of this post. Maybe readers can give me something more than a moral objection to the question posed here; maybe a moral objection is enough but the point is, I think we should at least talk about it.

Occasionally, everybody tingles, or has numb fingers or toes, or feels the nerve at the back of their leg twitch to give them shooting pain. They may be woken by restless legs that shudder without reason, or recoil if they touch something too hot or too cold, or conclude they've got a trapped nerve somewhere on their bodies. These are all perfectly normal but nothing prepares you for the effects of your nervous system going into major short-circuit mode!

I've been exchanging emails with Jamie for about 9 months now; at first not for any other reason than he has neuropathy and has got it bad. He has followed the same frustrating path that many people do when faced with burning feet and loss of sensation in toes. Each treatment is equally as ineffective as the last and like many of us he has ended up on opiates which have finally given him some relief.

However, this story has nothing to do with neuropathy and everything to do with the fact that he was a bug chaser and having chased the bug, has tracked it down and it chases him these days.

My last article was about people who find it very difficult to commit to others; no matter how much they care about them, they just can't get over that feeling that they're going to become someone's property and lose their sense of self. Those people rarely open up to the possibilities of a relationship.

However, there's another side to that same coin and that's the fear of being abandoned, neglected; left in the lurch and not being loved. It's called separation anxiety and it's equally painful and equally destructive to healthy relationships.

If you're living with HIV, you've already been through stuff; that's a given. You may have seen friends or lovers dying, or being seriously ill and recovering by the skin of their teeth to live on bearing the scars. You may also have had your own brushes with disaster, leading to a well-justified and experience-based fear of the unknown and the future. If you're lucky, you've found a partner along the way to share shit with; someone to lift you up when you're down, just as you do to them. If you're not so lucky, you may be living alone, hoping that a new relationship may turn up; or just getting along, grabbing moments when you can and getting through, happy enough but not looking for wedding bells on the horizon.

While most modern leaders base their careers on the Machiavellian quote that "It is better to be feared than loved," a handful of people throughout history prove by their lives and work that that doesn't necessarily have to be true. Gandhi, Martin Luther King, Mother Theresa are names that spring to mind but history may judge Nelson Mandela to be possibly the greatest of them all. His ability to unite a land on the edge of chaos and riddled with partisan hatred and division, after 27 years of imprisonment and personal humiliation, is nothing short of miraculous.

English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.

Arriving on TheBody.com, originally, was the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a daily Blog and a website where practical information, hints, tips and experiences for patients could be gathered together in one place.

However, I was also given the chance to write about other aspects of living with HIV and have now contributed more articles about those than about neuropathy. That said, neuropathy remains my 'core subject' although one which unfortunately dominates both my life and that of many other HIV-positive people.

I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.

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